State of the Registry report shines light on inequalities facing ethnic minority patients with blood cancer

Last year saw the highest ever number of black, Asian and minority ethnic (BAME) people register as stem cell donors, according to a new report which shines a light on the inequalities which remain for BAME patients in need of donors. The annual review from Anthony Nolan and NHS Blood and Transplant, From Strength to Strength, reveals that BAME people made up 23% (42,326) of new registered adults on the UK donor register, which rose by 185,000 in 2016 to almost 1.3 million.

While the number of new donors from BAME backgrounds is an important step towards diversification, more work is needed to address imbalances in the ethnic makeup of the donor pool. Despite this year’s increase, BAME donors still make up just 15% of the register (the remainder are 78% northern European, 7% unknown/prefer not to say); the shortage means that BAME patients have only a 20.5% chance of finding the best possible donor match, compared to 69% for northern Europeans.

2016 also saw a record number of young men register as stem cell donors (35%; 64,226), but thousands more are still needed.

UK donor registers are urging more BAME people and young men to join up

Currently, men make up less than 40% of the register (39.6%; 510,804), but provide almost 80% (79.6%) of all donations. Male donors are generally preferred as their bigger body mass means they can produce more stem cells, and they are more likely to be available than women, who are unable to donate while pregnant or for 12 months after giving birth. Recently-published research from the Anthony Nolan Research Institute showed that patients receiving transplants from donors aged under 30 had better transplant outcomes, further highlighting the need for younger donors.

As a result, the UK donor registers are urging more BAME people and young men to join up and ensure that all patients in need of a transplant can find a potentially lifesaving match.

The report also reveals that, in 2016, 1,131 UK patients received a stem cell transplant using cells from an unrelated donor or cord blood unit. Of these, 411 donations came from UK donors; 604 from overseas donors; 41 from a UK cord blood unit; and 75 from an imported cord blood unit.

Cord blood stem cells, which are collected after a woman gives birth, are an important commodity in stem cell transplantation as they can be given to patients who lack a match on the adult donor register, such as those with rare ethnic heritage. More than 3,500 units of umbilical cord blood were banked for stem cell transplantation in the UK in 2016, bringing the total number of banked cord blood units up to 20,000; as a result, 41 lifesaving transplants using cord blood were facilitated in 2016, up from 32 the previous year. Currently, ten UK maternity wards have cord blood collection facilities.

"We will continue to work hard to recruit more minority ethnic and young male donors"

The combined UK register is known as the Anthony Nolan and NHS Stem Cell Registry, and is made up of donors recruited by NHS Blood and Transplant, the Welsh Blood Service, DKMS UK and Anthony Nolan. When someone in the UK is in need of a transplant, Anthony Nolan carries out a search of the combined UK registers, including the cord blood bank, for a match. If no match is available in the UK, Anthony Nolan then conducts a search of the worldwide donor register.

Henny Braund, Chief Executive of Anthony Nolan, said: “From Strength to Strength shines a light on the inequalities which remain for black, Asian and minority ethnic patients in need of donors. We will continue to work hard to recruit more minority ethnic and young male donors so we can achieve our goal of finding the best possible match for everyone in need of a transplant.

“The report also clearly shows that we made encouraging progress in diversifying the register through targeted activity to recruit more young men and people from diverse backgrounds as donors. It’s pleasing to see a significant increase in cord blood units banked, as cord blood can bridge the gap between the lack of minority ethnic donors, and patients in need.”

Guy Parkes, Head of Stem Cell Donation & Transplantation at NHS Blood and Transplant, said: "We are delighted with the strengthening collaboration that makes up the Anthony Nolan and NHS Stem Cell Registry. Our joint strategy of recruiting the most sought after donors and banking cords with high cell doses, and then using the latest typing technology to aid better matching to patients, has proved to be extremely successful. As a result we continue to see a year on year increase in the number of UK patients that we are able to help with lifesaving stem cell donations."

"It’s important that we continue to expand the UK register and continue to recruit BAME donors"

Cath O’Brien, Director of the Welsh Blood Service, said: “We’re pleased to see an increase in BAME donors registering to give bone marrow and stem cells. We strive to ensure that our panel of donors are committed and that we are able to provide a quick response to the needs of UK transplant centres.

“It’s important that we continue to expand the UK register and continue to recruit BAME donors, to ensure that all patients in need of a transplant can find a potentially lifesaving match.”

Stephan Schumacher, CEO of DKMS UK said: “Since launching in the UK in 2013, DKMS continues to grow from strength to strength. We’ve marked our 300,000th blood stem cell donor milestone and continue to be dedicated to the fight against blood cancer.

“Our aim is to find a matching donor for every patient. Last year alone, 401 donors from the DKMS family helped to give UK patients a second chance at life. Through our activity in the UK, we hope to increase the support for blood cancer patients – both in the UK and around the world. Our aim is to encourage more donors to register, especially those of different ethnic minorities.”

Vit Karunanithy, 21, is a student from London and a volunteer at KCL Marrow, one of more than 50 student groups which raise awareness of the stem cell register and blood cancer at universities around the UK. He says: “It may look on the face of it that people from BAME communities don’t care, but it’s not that simple. I don’t think there is as much awareness of stem cell donation – I joined the register after seeing an appeal for Vithiya Alphons on Facebook last year. It may sound slightly self-centred but I joined since she was from the Tamil community like me, and before this I hadn't really thought about it.

“I feel I should have signed up earlier, however now I'm glad I signed up as I've had the opportunity to be part of KCL Marrow and join in the wonderful work Marrow do. Marrow is so important because it has a significant effect on people around the world. Not many people would have even heard of stem cell donation without the help of Marrow.”